Parents Bill and Suzanne have been on a "rollercoaster of emotion" after finding out both their children have scoliosis (Image: Alison Jenkins)

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A Sawbridgeworth family are facing a desperate battle to raise tens of thousands of pounds to take their young daughter abroad for surgery on her scoliosis - after pioneering treatment was pulled from the NHS.

Primary school teacher Suzanne Kingston, 49, first noticed something wasn’t quite right with her daughter Alis’ spine in 2016.

She explained: “We were at a festival and as Alis was walking along I noticed that something was really odd with her crop top — it was touching her shorts on one side but there was a really big gap on the other.

“I started trying to straighten her up but it wasn’t happening. Eventually I stopped and had a look at her back and I noticed her spine was bent in the middle.”

In early 2017— after almost a year of appointments and referrals — 15-year-old Alis was finally told that she’d need surgery, due to the seriousness of the bend and the “severe trunk shift” it had caused.

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The Leventhorpe pupil said: “I hadn’t heard of scoliosis before so I didn’t really understand it at first.

“It was very new so I didn’t really know what to expect but then it got more scary as it went on.

“I find that it does hurt, just carrying my school bag, and after PE it aches.”

The NHS has since offered the brave youngster a treatment called Fusion — a “big, traumatic and difficult” operation that would see 12 of her spinal discs removed and replaced with bits of bone.

Titanium rods would then be drilled into her spine and secured with screws, forcibly straightening the spine until it fused together — which her parents say would lead to limited flexibility and a host of potentially serious complications in the future.

However, other countries including Germany, Turkey and the US are pushing ahead with an alternative treatment called VBT, which involves the insertion of a long, flexible cord into the spine to pull it straight.

Bill, Holi, Alis and Suzanne Kingston have to raise the funds by August (Image: Alison Jenkins)

The pioneering surgery — which was flung into the public eye after Simon Cowell paid for a young Britain’s Got Talent dancer to have it in 2017 — was previously performed for a short time in the UK.

It was pulled in late 2016, however, after the NHS said they needed to do more research — just weeks before Alis was told she needed surgery.

Now Suzanne and dad Bill have been left with the daunting task of raising over £30,000 to pay for the treatment abroad.

They have also since been given the devastating news that their 12-year-old daughter Holi is suffering from the condition too.

In an effort to avoid having to have surgery of her own, the youngster is now forced to wear a rigid, plastic brace for 23 hours a day.

“I normally take it off for an hour in the evening when I want to be on the sofa, because it’s way more comfy.”

According to the family, UK doctors have been left frustrated by the lack of progress towards bringing VBT back to the NHS, with Alis’ consultants said to be supportive of their decision to take her abroad.

Alis' spine has a curve of 50 degrees - considered to be a severe deformity

Blinking back tears, she added: “It’s such a huge journey and there’s such a long way to go. It’s hard to know where to start.

“I’ve had this rollercoaster of emotions — can you imagine?

“You hear about your child and that’s bad enough, and so you try and sort it out and find the best you can for her — but then you find out the best thing that’s available actually isn’t available, and it’s a battle every step of the way.”

With time running out before Alis loses the flexibility required in her growing spine for VBT, the family have booked her in for surgery this August, and face a race to raise the cash before then.

In the meantime, she’s left trying to keep as active as possible to keep her spine flexible for the surgery — which she’ll have just after she sits her GCSE exams.

A spokeswoman for NHS England said: “There is currently not enough clinical evidence for the NHS to be able to routinely commission vertebral body tethering (VBT) because there is uncertainty about its long term safety and effectiveness.

"There has been agreement among clinicians that it may help some patients, but it has been agreed that formal evaluation is required before it can be routinely carried out."